Have We Had a Movie About Disability Better Than ‘The Diving Bell and the Butterfly’?

Even a decade later, Julian Schnabel’s depiction of disability went to a space few cinematic depictions do.

Oscar season is abundant with clichés, and few are as curiously copious as disability narratives. In this kind of story, a character emerges, born with a disability or with one foisted upon them, and, throughout the course of the movie, the disability or the character’s existence with it is slowly normalized. The narrative is acutely functional. For award voters, they often look to ostensibly extreme forms of the acting skill that they are tasked with recognizing (per a 2012 BBC survey, 16% of all Oscar winners portrayed someone with a disability) and, for the talent themselves, it seems like a cool challenge. Daniel Day-Lewis, as a recent cover story for W. attested, was attracted to his first Oscar-winning role — as Christy Brown, a painter who was born with cerebral palsy, in Jim Sheridan’s My Left Foot — because, after he saw the script, he was “convinced that it couldn’t be done.” So, he did it. For this reason, perhaps, it is of little surprise that the roles are rarely performed by actors with the disabilities being portrayed. A way of life for some: a challenge for others.

Julian Schnabel’s The Diving Bell and the Butterfly, which was released in the US ten years ago last week, remains a strange curio in the disability discourse. It made no strides in representational politics or in normalizing its subject and, instead, depicts the life of its disabled subject as harrowing and generally hopeless. Adapted from the memoir of Jean-Dominque Bauby, an editor of ELLE magazine who had a massive stroke at the age of 43 that left him entirely paralyzed with the exception of one eye, the story is as closed off as Bauby’s body, a solitary space whose stillness Mathieu Amalric embodies in frustrated silence.

It is a story with a very specific kind of narrowness that closes itself off from inspiration or projection. Compared to Day-Lewis’s Brown, whose mastery of his environment and accumulation of skills are a filmic, physical accomplishment, Amalric’s Bauby leads a filmed life that is narrow, short and never particularly “normal”. He writes a short but vivid memoir communicated entirely by blinking his eye, and Ronald Harwood’s script makes a point to depict this matter-of-factly, less as a triumph than an act of frustrated boredom and vanity. Even less sparingly than Bauby’s memoir, Harwood’s script creates a character with few sentimental flourishes, a careerist who left the mother of his children and who is revolted by the sight of those impaired like him. The movie ruthlessly rejects patness.

The book he finally writes conveys the immediacy of its subject’s disability through its abruptness — the chapters are small and end with modernist suddenness. “These frequent shifts of reflective thoughts may represent the experience of disability, depicting the fluctuating ebb and flow of both grief and hope,” writes Sarah Caston, a professor of physical therapy, on an Emory University blog. Janusz Kamiński, in one of the most powerful moments of his storied cinematography career, conveys this immediately through alarmingly intimate camera work that jettisons any sense of distance between Bauby and the viewer. Some of the directorial techniques verge on French New Wave cliché — the wobbling camera, the impressionistic light pouring in through the curtains — but, in Schnabel’s hands, they push beyond the observational constraints of even the most realistic cinema. Caston remarks of the opening: “[The] striking perspective offers a potential glimpse into a reality that many of our patients experience as they arose from deep sedation after surgery, or, a catastrophic event such as a stroke.”

The difference between offering a glimpse into and a glimpse at disability hints at the depth of Schnabel’s accomplishment. The grander Oscar narrative of filmed disability is one of watching the reactions of others, from Tom Cruise in Rain Man to Alec Baldwin and Kristen Stewart in Still Alice. There is a tendency to filter disability through the lens of those around the disabled. But, in The Diving Bell, disability is a fundamentally lonely and insular concern. Moments, when well-intentioned nurses and family members attempt to enter his life, are drawn out with a vivid frustration, consciously or unconsciously robbing Bauby of his ability to make his own choices.

The movie’s refusal to normalize Bauby’s existence is another rejection of storytelling patness. Viewers are left not with narrative finality, but the remains of a broken system. The ending is just as stark as the beginning. A jolt that tugs unplaceable sadness. A seismic imitation of inflexible powerlessness. We are again, just as we were at the start, placed inside an unfamiliar body. The inability to navigate feels fitting and, in its own way, different than even the most remarkably performed depictions of disability in the movies. Even the character played by Sally Hawkins in The Shape of Water, who is slowly emerging as this season’s Oscar frontrunner for her performance as a mute who communicates through sign language, always feels held just above us. We are chasing a narrative that feels simultaneously too fantastical and conventional — one that’s meant to give the viewer hope, but is distinctly in the realm of distant fairytale. The Diving Bell and the Butterfly resists the fairytale narrative, representing the experience of disability with an unflinching lack of sentimentality and a fixation on the isolation of being trapped inside oneself. Ultimately, this is something we have yet to see again.